Archives for August 2009

Having Hannah in my life has really made me take a step back and reevaluate so many things in my life.  Watching the struggles she has faced and how it has affected our family as a whole has really opened my eyes.  When they say “children are a gift,” it means more know than ever, especially since this is a gift that will be taken away from me unless a cure or treatment can be found.

My Husband
I am so damn lucky to be married to my awesome husband.  He truly is my best friend, and we have such a solid partnership in this marriage.  We have talked about it many times, how situations like this can drive couples apart.  But these situations such as dealing with the infertility for so many years, the adoption process, and now being faced with losing our baby girl has just made us stronger.  As he joked last night, “this relationship is the least of our worries.”  

He is such a great, great father.  Such a hands on dad.  He has no problems with diaper duty or anything that is messy or wifey or whatever.   He actually is better at housework than I am, by a mile! 

I worry about him because he has so much pressure right now because I am not bringing in an income because Hannah needs constant care.  He would rather spend time with us, his family, than go hanging out with friends or doing “guy stuff.”

Twelve years.  We have been married twelve years.  We got engaged just a few months after we met.  Heck, we knew we were going to be getting married on our first date.  

This situation with Hannah has been unique for us, obviously.  It is hard to talk about the “what if” and “when” of Hannah’s disease.  We discuss things when they come up because we can’t ignore certain things, especially when it comes to dealing with Ethan and Abigail.  But I let him concentrate on providing for our house and family, and I concentrate on Hannah (talking to researchers, educating myself on the disease specifics, creating awareness, etc.).  It is a good partnership for us. 

I know so many people say they have the best husband in the world.  But you know what, I really do.

For the past 24 hours, I have had the stomach bug from hell. This morning I was so miserable that I basically forced my husband to stay home to take care of the kids. I was so bad that I couldn’t figure out how I could take care of Hannah during the day. I ended up sleeping until 12:30 pm today! (But I am starting to feel much better now).

Because I wasn’t feeling good, Daddy took Hannah to occupational therapy. She did not want to have ANY of it. From the moment that they took the paci out of her mouth, she apparently went hysterical. They tried walking her around the offices, trying to distract her. It could have been because she was just tired since she had just woken up or it could have been a change in routine with Daddy taking her instead of me, who knows. Needless to say, that didn’t go well.

When we were at the NIH a couple of weeks ago, we met with their PMR (Physical Medicine and Rehabilitation) physician, OT, and their PT. Their recommendations for therapy were as follows… 1] PT at least once a week (which we have), 2] increase OT to at least twice a week to incorporate fine motor skills along with the feeding issues, 3] add Speech therapy (ST) once a week because of the oral issues and vocal cord paresis, 4] add vision therapy through Early Intervention, and 5] continue developmental therapy with ECI.

That comes out to a minimum of 6 therapies of week but optimally 8. This doesn’t include her Cerezyme infusion treatments downtown every other Monday.

She is just 12 months old. I know the goal is to try and teach her as much as we can now while she is very suspectible to learning because we know there will be a point that it won’t be like this. But that is a LOT of therapies every week.

I feel like I need to determine what would be the best compromise for everyone. I mean, I don’t want to short her with the services she needs, but I also don’t want to overwhelm her. Also, I still do have the other two kids to take into consideration, but fortunately school starts in a few weeks.

I don’t know what would be the best compromise. This is something I need to work out.

We had Hannah’s birthday party on Sunday, and it was a huge success.  Everything went just as I had hoped!

We ended up with about 50 friends and their kids, probably about 20 kids ranging in age from 11 months to 11 years old.  We had old friends from New Orleans come visit as well as friends who drove from Dallas and New Braunfels just to help celebrate Hannah’s day.  It meant so much to us to have our friends and neighbors spent an afternoon with us celebrating a milestone I truly thought we would never see.   Even our pediatrician whom we just adore celebrated with us.

Not surprisingly, Hannah really had little interest in eating any cake.  She did play with it after a while though!  We had rented a bouncer and snow cone machine for the backyard, and that was a huge hit.  I don’t think I ever saw less than 5 kids in that thing, many times more!  We had also sent up an art center with a few projects in the living room for those kids who didn’t want to be outside in the heat and humidity, and many kids enjoyed that too.   It was just a lot of fun.

I have pictures that have yet to be unloaded yet, and our friend Misti, a photographer, took a lot of pictures for us, which I can’t wait to see. 

For me, it really was a celebration of such a long year.  Hannah made it.  She made it to her first birthday, and she did it smiling and happy.  I couldn’t ask for anything more!  Having our friends be there to celebrate this milestone (and those who couldn’t make it but sent cards and emails and phone calls)  just warmed my heart because it showed me that Hannah really does have so many people that care about her.  

Sometimes my hubby and I feel quite alone in this fight, but after this weekend, I know we aren’t alone.   It is a great feeling.

In about 14 hours, Hannah’s first birthday party celebration is going to begin.  We have spent the day putting up balloons, reorganizing the house, and just preparing for this momentous event.   We have received dozens of birthday cards and some gifts from friends and well-wishers, which have made this milestone even more exciting to celebrate knowing that so many people care about Hannah and are cheering her on. 

But tonight I have to take a step back and realize how far we have come in our fight against this disease.   We have made it to her first birthday.  However, in just the past couple of weeks, we have lost a sweet little 8-month-old boy to Gaucher’s type 2 and have two GD2 children fighting for their lives right now.   I only know of about 20 families with kids living with this disease as it is. 

This disease is just brutal.  It shouldn’t be this way.  I keep thinking…Will Hannah make it to her second birthday?